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Cody’s Battle Against Ewing’s Sarcoma

Cody was diagnosed with Ewing’s Sarcoma May 7th, 2019. His first step in treatment starts Wednesday, May 22nd with chemo for 12 weeks. Please follow this blog for updates[...] read more

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Tumor Board Results, ER Trip and Radiologist Meeting

So, a lot has happened since Cycle 5. I’m trying to keep everyone in the loop but honestly, I’m tired. So here is the latest. 

Last week Friday, I walked in the door from working all day and Cody met me in the doorway saying his port was hurting him more than usual and thought it looked red. It was definitely red, irritated and warm to the touch. I called his doctor immediately and they urged us to get to U of M ER ASAP to get it checked out. His blood count was about as low as it could be without delaying treatment so he was at risk of infection.
Naturally, he fought me on going but once the nurse told him that if it was infected, he could be dead from sepsis in 24 hours. So he really had no choice. 
After waiting for 4 hours in the waiting room, he was seen around midnight. Everyone that saw it thought it looked infected. They immediately started him on an IV and antibiotics and admitted him. They also took blood from his port site and his arm IV to do blood cultures. They were looking to see if the infection reached his blood stream or if it was just in the skin tissue by his port. By 6am the next day, they did his bloodwork and his hemoglobin came back at 6.9. They thought it was a fluke so they rechecked it and it came back at a 7. Considering his body was already fighting off an infection and it was working hard to get blood to all of his organs, they quickly decided to give him a blood transfusion. 
Over the course of the day, an intervention radiologist came to check the port site. (IR’s are the ones that surgically implant the port so they have the best idea of what a port infection would be/look like). He thought it looked infected but suggested waiting to see how the antibiotics worked before considering removing the port all together.
Sunday came and the cultures came back clear. They let them grow over the course of 5 days. They sent Cody home with 2 oral antibiotics and have been checking in every day with him to make sure it’s looking better and he’s feeling good.

Friday morning, before the infection shit show, the oncologist called Cody to let him know the tumor board decided on radiation. The surgeon said that surgery would be too invasive and they would have literally had to remove the right half of his pelvis. So obviously, his quality of life would have been ruined in so many ways.

Today was the meeting with the radiology oncologist. On the way in, Cody received a call from the hospital saying his blood cultures from over the weekend (remember the 5 day max on the blood culture) showed a random bacteria growth that generally wouldn’t be related to this kind of infection. So they think his cultures were contaminated and wanted him to get the cultures redone today after the meeting to ensure he does not have an infection- especially with a rare bacteria. 

The radiologist appointment went with little surprises. I had done quite a bit of research before hand so there wasn’t anything that we weren’t aware of in terms of possible side effects. They are doing another MRI and CT rescan in the position he will be receiving radiation so that they can accurately work with their physicist in getting the right angles together for the radiation beams to hit the tumor and surrounding margins.
They said most likely to expect treatment to be 6 to 7 weeks, Monday through Friday for one hour. They are going to be using photon radiation at 55% intensity. By the time the scans are done, Cody gets the clear with his blood counts/chemo scheduling and they have the plan together with the physicist, he most likely won’t start radiation until mid September. 

Sooo that’s where we are at right now. Sunday they will do the MRI, Monday he starts cycle 6 of the 5 day chemo treatment, Tuesday morning he will have the CT scan. Unless for some reason the oncologists want his 6th cycle of chemo in before rescans, we should know what the radiation plan is by the end of this month.

As always, we appreciate you all and your kind words and prayers. 

💛 Andrea 

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